Avelumab, Evaluation Week….

images-1

 

This past week has been incredibly difficult.  Difficult in a way that I don’t even know how to process with authenticity.  To be honest, I am mad at God.  I still trust Him…but I’m mad.  Forty-five years of RRP…I’m tired…tired of this broken body that I neither asked for or caused.  I entered the trial with such hope.  The idea that we may have a pathway to a cure….or even just a nonsurgical option….my mind raced ahead imagining a life post-RRP.  I didn’t allow myself to really consider being a non-responder.  I did all the things I was always told to do…I prayed, I trusted…I may have even softly begged…..and at the end of the day….I was the first non-responder.  Now, I sit trying to understand the why of it all….and I realize I’m just mad.  Does that make me less of a Christian?  Does that mean I don’t really trust God….or does it simply mean that I am human living in this world that can often seem so cruel….even to those who have the strongest of faith?

I’ve learned these past few days how cruel some of the “right things” Christians say can be….I recall learning some of these after my Mom died…but they seemed easier to hear then…maybe because I knew for certain she was now without pain….she was free from the cancer that had entered into her life ten years prior to her going “home.”  She was in peace…and I could wrap my head around that and be ok with all of the grieving process….but this….now…I honestly am struggling to understand the why of it all.

So, here’s my recap of my first Avelumab evaluation..three infusions down..two OR procedures down….and it all comes down to a CT scan.

I flew into DC on Monday so that I could avoid that 5:45 AM flight on Tuesday….Tuesday began with labs and my being able to follow up on Mr. Wesley’s house story….such a kind man.  His family came here from India…and his heart is so tender, yet so funny.  Seems they put in the contract on the house of his dreams…and then his wife became upset with him and cancelled the contract…then went to India for two weeks to visit family.  Ok….you just have to imagine this story…it is and was hilarious.  He described every detail of the house to me on Tuesday morning…he was in love with this house, but he knew…it was no longer his house to own.  I’ll come back to Mr. Wesley in a bit.  Soon, it was time to head to the CT department.  When my name was called and I entered the CT room, I was caught off guard by the weight of the test and everything this scan would stand for….a machine that is incapable of empathy…untruth…what it would tell the radiologist reading my results for the trial would be 100% without human error.  The results would be whatever they were and no one could argue against the results. Thankfully, I had made dinner plans that allowed me to escape the over-thinking nature I hold….a couple of hours where I didn’t ponder the “what if, the results…”

My fellow RRP friend and I met in person for the first time for dinner on Tuesday evening.  Irish food in Chinatown.  Such a neat place for dinner and you honestly felt as if you had stepped into an Irish pub in Ireland.  Fellow RRP folks…well..we are one big family.  The safe space of not having to explain our voice, our life…knowing the person across the table from you gets it…people you have never met in person, but you would do anything for them…because, well, our community is small, but our  hearts are large.  Back to the red line I went…and whether I wanted it to or not…Wednesday was coming.

Lee flew in to DC on Wednesday morning.  The timing worked out so that he was entering the NIH just shortly before the clinic appointment where I would be given results…where I would learn if I went on to cycle 2, or if my time in the trial was coming to an end.  Doctors have terrible poker faces…as do the trial nurses and trial PA’s…no one even had to say a word.  It was written across their face.  The defeat and disappointment we all felt…so real. The idea that I would not respond at all…didn’t even enter my mind before clinic.  I was unprepared for that result…and maybe in an odd way that was good…would being a partial responder and removed from trial be harder to take in?  We chatted about what comes next (exit CT, labs, clinic on 3/28)…and what is being learned from my blood and tissue samples…in that moment I didn’t get emotional.  I was stoic…almost having this overwhelming desire to encourage the team….my emotions would wait…clinic was over…back to the floor I went and with a quick check-out for the afternoon, Lee and I were on pass.  DC in four hours would be the goal…Lee’s first trip into DC.

DC was a very welcome escape from all of it.  Just the outdoor air and walking from the Capital to the Lincoln Memorial and points in-between.  Walking through the WW2 Memorial, the Korean Memorial, the Vietnam Memorial….seeing quotes from those before my time here on earth…words of wisdom we need today in this sea of chaos swirling around us.  Albert Einstein and I had a little chat about RRP and I’ve enlisted him to help find a cure for all of the community…he seemed receptive to the idea.  Soon, my body said it was tired and back to the red line we went…and with a stop at Bethesda…dinner at Passion Fish.  We grabbed the floor staff/nurses a box of cupcakes from Georgetown Cupcakes and back to the NIH we went.  Surgery time would come soon on Thursday…cupcakes delivered, thank you notes delivered to staff/nurses and to my Mr. Wesley.

Due to my CT results, I would receive no more infusions and my Thursday would be a trip to the OR for a normal RRP debulking procedure.  Still stoic…still trying to be Ms. Positive Spin…I knew it was all a lie….but mask on…I pushed through.  Surgery came and went….the plus side of surgery with no infusion to follow was that I could take the steroid push in the OR to help me come out of anesthesia quicker.  Instead of sleeping until 6 in the evening, I was awake and functioning by 2:30pm.  Oh, and no research labs since I was on the door out….now back to Mr. Wesley…at some point in the afternoon, I decided I wanted to walk down for better food.  I did not know on the basement level was better food than the room service or second floor.  When I returned to my room, there was a note from Mr. Wesley.  He left me a note to look at his house…the house he was not going to be getting…something so simple that meant so much to him, he wanted to share.  That note is going in my hatbox.  It’s a treasure.

Friday was fairly boring with the exception of my love of Zofran….fewer team members came in on Friday….and as nurses learned of my response, we all worked through that.  I think that’s what makes the NIH so special…you are part of something bigger than yourself whether as a trial participant or NIH employee.  Your win is their win…your loss is their loss.  Lee and I felt prompted to shower the unit with a bit more love, so we sent a bouquet of flowers.  Nurses and the staff on floors are truly the unsung heroes of medicine.  They deal with us when we are often at our worst…and often without a single thank-you.  When I would walk by the flowers, later in the day, I would smile knowing those flowers represented the level of care I was part of.

Saturday was everyone on airplanes back to Chicagoland.  Josh coming in for break on a flight, me on a flight and Lee landing at Midway…a quick trip to Raising Cane’s and it was indoors under a blanket…where Zofran and I continued our relationship…still ongoing today….

So, that’s the recap of the week…now back to the realness and my thoughts now.

I learned something over the weekend from Lee…it seems in pre-op…I broke down.  I broke down in front of the entire team. I have no memory of this…but I am told I was talking about the journey and how I ended up where I had so prayed not to end up.  I’ve tried to see the perspective of this…that my coming home was not the same as someone being removed from trial that had stage IV cancer…where their coming home was “going home to die.”  I was coming home to the same life I had before entering the trial.  Yes, the drug has forever altered my immune system and we don’t know if I could possibly have a delayed response….there’s just so much unknown in the world of cancer immunotherapy. I can’t let my head go there…to that possibility…because the heartache a second time…I’m just not that strong.  I’m really not strong at all…I just have learned over the course of a lifetime how to wear the mask for those around me…..but if I am being honest…I envy most everyone around me..the ease at which they talk…the ease at which they can live life…life without counting down days until the next OR procedure…life always wondering if this scan is the one that shows conversion to cancer…life without having to wonder what changes are coming to healthcare in the US….life in a world where so often, those with visible signs of being “less than perfect” are in many ways sitting on the back of the bus.

As I said in the blog before this….nothing about this is well with my soul…and I don’t know when it will be.  I’m human and want to know why I have this disease and why I didn’t respond…when others have.  I don’t want to hear how it’s all part of God’s plan…the God I love….He can most certainly use everything to His good…but I don’t believe in a God that brings sickness to his beloved.  Sickness is from this fallen, broken world…but, I’m mad today….when I stop to think of all of it…the tears just roll down my cheek…so, I am working minute by minute to push it all back down….

Do I regret the trial?  No.  I would honestly do it all over again without hesitation.  It was the best shot I have had in my lifetime….and the things being learned in this trial….they could lead towards the cure I so crave…even though I know now that a cure doesn’t mean life without a trach.  For those responding, I am so happy for them.  That’s where I can go back to family….family that cheers one another on…but also sits in the grief of the disease when necessary…which is what I am doing now…something I don’t recall every doing before…letting myself sit in the grief of my disease and it’s impact on my life….maybe allowing myself this process will help me not grieve this disease again….where I decide to live a life without the mask.

One day, hopefully soon, I can be like Snoopy in the pic below….just not today….one day.

images

 

 

Can a Gospel Christian Be Blue?

I was raised in the South.  I’ve lived in Mississippi, the suburbs of Memphis, Texas and Arkansas.

I’ve seen racism first hand.  I’ve seen fear of someone that didn’t look like “White America” first hand.  I’ve seen it all.  I was born in the late sixties….well after the Civil Rights marches…and still…I’ve seen it all. We live in a United States of America where not a single person over the age of 18 should have to “research” a white supremacist group.  We should all be so against the ideology of those groups that we jump to condemn  it.  America, we don’t want to go back to the days of segregation or people singled out due to the color of their skin or religion.  That’s not America.

I’ve seen poverty up close. I’ve seen homeless veterans on the street.  I’ve seen homeless single moms on the street. I’ve been able to see up close those who live in nothing more than a strong cardboard box with a door.  I’ve been a child of poverty and technical homelessness.

I’ve been part of the “poor school.” I’ve been part of the “rich school.”  I’ve been part of heated battles as districts have redrawn lines for attendance, and those arguments almost always are rooted in who parents wanted Joe and Mary to attend school with.  In 2016, we do not have equitable education in America.  I certainly don’t know the solution, but I do know it’s real.

I’ve been a child with no medical insurance.  I’ve been an adult subject to pre-existing clauses…a clause that can jeopardize the life of any American with a pre-existing disease.  Change jobs, no insurance coverage for 6-12 months on that condition.  I can’t agree to go back to that.  A mandate with issues also has some areas that protect our sick, our children, our college children.

I have never lived in a nation where the media was controlled or censored. I heard the threat of that being the case from the leader of the Red. I went back to eight grade Civics where I learned “to silence the media is the first step in silencing us all. ”

I remember the days we said the Pledge of Allegiance in schools.  The days where it seemed all was well in the United States.  We can’t go back.  Frankly, I don’t want to.  I am thrilled to know that we truly are the melting pot of the world.  Whether I like or agree with some of what we have now is irrelevant.  Give us your tired, your weary…..not give us your Baptist, or Methodist or whites.  Unless  you are Native American in heritage, you are a product of immigration.  I’m a product of immigration.  A mut.  I’m not purebred anything.  I’m a mixture of this and that, just like most Americans.

I am a Gospel Christian.  A Southern Baptist by denomination.  I am not like the WBC radicals.  I have to trust that if I can be free to practice my faith and not be associated with the radicals of the WBC, that others who practice a different religion are to be free to do so as well.  I cannot fear what I do not understand.  I cannot judge an entire group of people due to the acts of a radical few.  I would hope the same is said for not judging my faith due to the radical few within the ranks.

I’ve have a vivid memory of the Carter years, the Reagan years, the Clinton years, the Bush 1 and 2 years and now, the Obama years.  I’ve seen our country rise up in times of great trials….and I’ve also seen our country split into little pieces over a determination to “get their way.”  The word compromise has become a four letter word.

I’ve been personally chastised for even possibly considering not voting Republican.  That’s what good Christians do.  Vote Republican.

And. Here I sit today.  In disbelief that what I have been told is the “Christian” party has all but crowned a man that represents none of the values I hold to be true as a Christian.  Seeing remarks such as, “Well, I can’t stand any of his principles, but I’ll vote for him if he is the nominee…I’ll vote my party.”  “We have to take back America.”  From who? From what?  From people that don’t have white skin?  Jesus didn’t have white skin.

I sit here today in disbelief that I’ve seen a quote, “I voted Trump, but I won’t tell my kids.”  I hope there never comes a day that I am embarrassed by who I voted for.

I get people are angry.  It’s ok to be angry, but to vote with that anger.  No.  We have to vote with our values and our principles…or we become just as lost as the lost.  We can’t control who follows us, but if we look around and we are being followed by hate…what does that say about “us” or “I?”  What message are we sending?

So, can a Christian vote blue?  This year, barring a strong third party candidate, I believe it’s possibly the only way I can look into the mirror and have any hope of saying I voted for at least some Christian values and principles. Where “almost right” may have to be enough. The lesser of two evils, so to speak. This past weekend, HRC sounded more Christian than most of the candidates running Red and ten-thousand times more Christian than the Red leader.  I have to vote knowing the protection of the First Amendment is just as important as protecting the Second Amendment.  A silent America is far more devastating to our future generations than gun control.

Years ago there was a movement of WWJD.  WWJD? I can’t begin to know, but I know what he commanded of His followers…..love, spread the good news to the ends of the earth…but the greatest of these commandments was to love.  And that, is what I will do.  I choose love over hate. I choose love over fear.  I choose humanity.  I choose life, not just birth…all of it.

 

 

When the Bottom Gives Way

Most days we walk and stand confidently on whatever surface we are on at that given time.  We tend to find ourselves sturdier on concrete than we do on an old wooden bridge, but we stand firmly knowing the bottom underneath us won’t fail.  What happens on that day where the bottom underneath us does give way?  Do we say we are never standing on that surface again, that we are never trusting that surface again….or do we figure out a way to stand back up and take “faith” in that surfaces ability to withstand our weight…our burdens…our life?

images

This past Friday, my beloved RRP community lost one of its brightest stars.  The bottom gave way for many of us, most of us.  That unwelcome reminder of the disease and all of its ugliness.For those of us with pulmonary involvement, it was one of those moments you wonder if you will be able to take your next breath.  I originally considered blogging specific to the RRP event of last week, but as the days have unfolded, I have found more questions regarding faith, God, the unknown….finding joy.  Not all my own questions, but a collection of questions from those in this special community that are working earnestly today to just regain the footing…..where the bottom gave way.  Then, I see these are not questions just for this community, but questions being asked daily, moment by moment….what to do when the bottom gives way.

Personally, my footing has been shaky for a few months.  I won’t go back into the details, but losing my Mother, a major life move and then learning of the progression of my disease…well….the bottom was barely hanging by a thread.  So, now I find myself consumed by my own mortality…my own unknowns….and consumed by this compelling need to find a better way….refusing to accept the  known…it’s clear it doesn’t work.  Questions to God such as, “Show me a purpose in all of this,” “Show me how this all fits,” and “Why?”  Most of all, as many in my community have expressed, finding “Joy.”

Life can kick you straight in the gut somedays.  It will knock you off your feet and send the bottom falling into the great abyss.  So, how do you get back up?  How do you function in the period between “standing firm” to “standing back up?”  What sustains you?  Clearly, death is not an area any of us are equipped to process on our own.  Just as the prospect of death is too much for a human to bear.  It’s clear we have to have something more.  It can’t just be on our own strength.

I’ll be honest.  I was one of those back in the day that would get so incredibly angry at God for taking the life of a child…cancer, RRP, tragic accidents….whatever it was. it was really only in the past couple of years that I began to see it in a different way.  My God, my savior, he mourns just as we mourn.  He grieves with us in illness and in death.  I have to know that when the fall of man took place, that fall was all of mankind.  His perfect creation forever ruined.  That brought us disease, pain, hunger…the very things we pray to end.  A world full of sinful mankind has unleashed  a world of sin….and I may never understand how or why….but I have to trust that in some way…at some point in time…everything bad will be used for good.  I have to trust this on the days that my tears and my weak human heart and mind are upset, angry, and finding anything but joy.

IMG_0363

I have to trust when I am paralyzed with fear or anger or hurt…that God will hold me up when the bottom gives way.  That when I think it’s impossible to take one more step, that He moves my feet for me.  I, in turn, have to be willing to let God then use me in ways I don’t see how I am even qualified for or how I even can find the strength for.  Where I find my trust is without borders.

I have to trust these words found in Romans 8:26-28 (The Message)

Meanwhile, the moment we get tired in the waiting, God’s Spirit is right alongside helping us along. If we don’t know how or what to pray, it doesn’t matter. He does our praying in and for us, making prayer out of our wordless sighs, our aching groans. He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That’s why we can be so sure that every detail in our lives of love for God is worked into something good.

How to you manage on those days the bottom gives way?  And how do you find the joy in the midst of such pain and sorrow?  How do you find the faith that allows you to trust what holds the bottom together?

Social Media and “Real Life” and Anxiety

Two things took place this week that have caused me to pause and reflect.  The first was a social media status from a young mom lamenting the “perfect picture” that most present on social media.  She made a war call for folks to have “real life” social media, at least balance that with the “perfect life.”  The second was as I watched an event at our beloved church in Arkansas.  The event was presented by Tangible Truth Ministries and was entitled “Addicted to Anxiety.”

real-life

I’ve said it before.  I do  not think I would survive being a young Mom in today’s social media driven world.  I would wake daily feeling as if I was a total failure….because by human nature I would look at all the “perfect lives” on Facebook, Instagram, blogs and feel defeat.  It’s unfortunate social media doesn’t come with a “baloney meter.”  I have looked back and I have found myself guilty of “tooting the horn of my children.”  There’s nothing wrong with that, BUT, it has to be tempered with reality.  Real life.  The world sees that Johnny made straight A’s, was awarded perfect student of the  month and was just sent a mail-out from a prestigious summer prep program.  What’s not seen is that Johnny regularly slaps his sister in anger when they fight, or that Johnny screams “I hate you” at least ten times a week or that Johnny falls apart each day as he walks in the door from school from sheer exhaustion of keeping up his “perfect life.”  Now, don’t put all your Mama drama on social media either…cause frankly….that’s exhausting too.  Do put your pleas for prayer or wisdom.  Be real on those days you long for the beach and two hours of sleep without a kiddo interrupting you.  That’s real life.  Real life is sometimes dinner is a bowl of cereal and fruit and well….even that was a miracle to make happen.  Life is messy…keep it real.  Keeping up with the “perfect” blogging world some present, or the perfect Facebook land others present or the pictures of the perfectly styled children on Instagram…..it will eat you from the inside.  This same message is true for those of us more seasoned.  Stop looking over at Susie’s “perfect life” and wishing you had it.  It’s not perfect.  Susie is just doing a better job of painting one for the outside world.  Real life.  Real people.

I’ll be honest.  I really thought I was pretty together until last night.  I realized, very quickly, I have a whole lot of junk in my shopping cart that is anxiety related.  What’s puzzling to me, is that I didn’t think of it in an anxiety way before.  Angie Smith, yes, that wonderful Christian author, was my first “oh my” moment.  I knew that I really did not care for new social situations.  I tend to look present, but in reality, I am sitting up on a cliff waiting for the situation to be over.  I have always felt  judged, compared, and even devalued….but for what reason, well…I know two devalue buttons, but I will have to get back with you on how this works out.  Anyways.  Angie Smith was being “real” about her life and her journey with anxiety.  She was once told something that will resonate with me for a very long time.  “Wherever you go, when you walk in the door, assume you are welcome.”  Wow.  I can honestly say, that for the most part, this has NOT been my life mantra.  I do better when I have a strong social butterfly friend with me, as I can somehow feed off their energy.  (Does this make me one of those fish who rides on a shark for food???) Until last night, I never really called it anxiety.  (I’m certain now is where therapists are beginning to circle my blog…that poor girl.)

tangible-truth-ministries_05

I wish I could just post here every single scripture or word by the speakers that I wanted to tattoo on my forehead.  I simply don’t have that brain capacity for memory and I did not take notes. (Event attendee fail.)  One other thing that I have said a million times, but it is worth repeating here…and is actually an integral part of the “Circle Talk” given by Susan Goss, of Tangible Truth Ministries.  “You were NOT meant to carry God’s load.”  Oh, how many times have I tried to carry that load and only when crippled in grief did I release it to God?  Is that a female thing, to try to fix and carry…or is it a matter of a hole in my relationship with God?

So, I am pondering.  What’s your anxiety?  What’s  your “real life?”

The feed from the ministry is available at : http://www.fbcbentonville.org  Right now, one part is on the front page and the first session is under Women’s Ministry.  I encourage you to watch.